End of Life Care for People with Intellectual and Developmental Disabilities


People with intellectual disabilities face many of the same issues at the end of life as people without such disabilities, as well as some additional issues and challenges. Today the life expectancy of a person with intellectual and developmental disabilities (IDD) is almost the same as it would be for a person in the general population. As people with intellectual disability live longer and are more integrated into the community, they outlive family caregivers more frequently. This often requires additional supports into advanced age, as well as different service locations, including choosing to receive care at the end of life in their own homes. The number of people in this situation is expected to rise as the “Baby Boomer” generation moves into this age category. This course provides an introduction to some critical issues that arise at the end of life for people with IDD. It is meant for all members of the interdisciplinary team that provide support and care. This course will introduce basic legal and ethical guidelines for decision making at the end of life. Advanced planning can provide clarity in complex, stressful situations in cases where people are unable to communicate or provide consent. Your knowledge of an individual’s preferences, as well as their basic rights and ethics, will help you support the person you are serving and their families. This course provides basic information about some common medical decisions that are included in an end of life plan, as well as information about specialized healthcare options such as palliative care and hospice. This is an overview course that provides general information; it is based on End of Life Care for Children and Adults with Intellectual and Developmental Disabilities (2010), published by AAIDD. Each state and agency will have its own laws, regulatory issues, and policies. After taking this course, staff should be sure to inform themselves about the specific policies and regulations that pertain to their role and responsibilities.


Hours: 1.00 - 1.25


Certificates provided by accrediting body (14 Match)

American Psychological Association

1.25 HOURS

Relias Learning, LLC is approved by the American Psychological Association to sponsor continuing education for psychologists. Relias Learning maintains responsibility for this program and its content. This activity is approved for 1.25 contact hours.

Association of Social Work Boards

1.25 HOURS

Relias Learning, LLC, #1273, is approved as a provider for social work continuing education by the Association of Social Work Boards (ASWB) www.aswb.org, through the Approved Continuing Education (ACE) program. Relias Learning, LLC maintains responsibility for the program. ASWB Approval Period: 2/10/2018-2/10/2021. Social workers should contact their regulatory board to determine course approval for continuing education credits.

Course Delivery Format: Asynchronous Distance Learning-interaction includes quizzes with questions and answers, posttests. This module is Text-based.

Social workers participating in this course will receive 1.25 Clinical continuing education clock hours.

New York State Education Department, Office of the Professions, Division of Professional Licensing Services, Social Work Unit

1.25 HOURS

Relias Learning, LLC is recognized by the New York State Education Department's State Board for Social Work as an approved provider of continuing education for licensed social workers #SW-0009.

Materials that are included in this course may include interventions and modalities that are beyond the authorized practice of licensed master social work and licensed clinical social work in New York. As a licensed professional, you are responsible for reviewing the scope of practice, including activities that are defined in law as beyond the boundaries of practice for an LMSW and LCSW. A licensee who practices beyond the authorized scope of practice could be charged with unprofessional conduct under the Education Law and Regents Rules.

As a provider of online, asynchronous education, some courses offered by Relias Learning are considered “self-study” under section 74.10(c)(2)(ii)(b)(4) of the Commissioner’s Regulations. The regulations limit self-study activities taken from a provider approved by the Education Department to no more than 12 hours in the 36-month registration period or one-third of the hours in a registration period other than 36 months.

Social workers will receive 1.25 continuing education hours for participating in this course. This activity is approved for 1.25 contact hours.

California Board of Registered Nursing

1.25 HOURS

Provider approved by the California Board of Registered Nursing, CEP# 13791

Nurses will receive 1.25 contact hours for participating in this course.

District of Columbia Board of Nursing


DC-RN -- District of Columbia Board of Nursing Approved Continuing Education program (CE Provider #50-290).

Nurses will receive 1.20 contact hours for participating in this course.

Florida Board of Clinical Social Work, Marriage and Family Therapy and Mental Health Counseling

1.25 HOURS

Provider #50-290 This activity is approved for 1.25 contact hours.

Florida Board of Nursing CE


Florida Board of Nursing CE Provider #: 50-290

Nurses will receive 1.00 contact hours for participating in this course.

American Nurses Credentialing Center

1.25 HOURS

Relias Learning, LLC is accredited as a provider of continuing nursing education by the American Nurses Credentialing Center’s Commission on Accreditation.

Nurses will receive 1.25 contact hours for participating in this course.

Florida Board of Psychology


Georgia Board of Nursing

1.25 HOURS

Georgia Board of Nursing CE Provider #: 50-290

Nurses will receive 1.25 contact hours for participating in this course.

Accreditation Council for Continuing Medical Education

1.25 HOURS

This activity has been planned and implemented in accordance with the accreditation requirements and policies of the Accreditation Council for Continuing Medical Education (ACCME) through the providership of Relias Learning. Relias Learning is accredited by the Accreditation Council for Continuing Medical Education to provide continuing medical education for physicians.

Relias Learning designates this enduring material activity for a maximum of 1.25 AMA PRA Category 1 Credit™. Physicians should claim only the credit commensurate with the extent of their participation in the activity.

South Carolina Board of Nursing

1.25 HOURS

This program was approved by the South Carolina Board of Nursing Approved Continuing Education Program (CE provider #50-290) CE Broker Course # 20-[Custom_Code]

Florida Board of Medicine

1.25 HOURS

Florida Board of Medicine CE Provider #: 50-290

Florida Physician Assistants

1.25 HOURS

Course Details

Hours: 1.25
Type: Online Course
Content Expiration Date: 10/31/2020
Learning Objectives:
Communicate with individuals with intellectual and developmental disabilities (IDD), their families, and healthcare surrogates about death, dying, and bereavement.
Identify who has the right to make healthcare decisions for individuals with IDD, including the definitions of informed consent, competency vs. capability, and healthcare power of attorney (surrogate, agent, or proxy).
Define advance directives and explain how you might create an end of life plan for a person you support who does not use verbal communication.
Explain where the following medical terms might fit on the continuum of one persons end of life healthcare: DNR orders, “futile treatment,” palliative care, persistent vegetative state, and hospice.
Name 3 actions you can take in your professional role to promote dignity, equality, life, and autonomy for individuals with disabilities at the end of life.

Section 1: Introduction
A. About This Course
B. Learning Objectives
Section 2: A Good Death
A. A Look Back
B. Death as a Medical Problem
C. What Is A Good Death?
D. The Needs of the Dying
E. Meet Edward
F. Review
G. Summary
Section 3: Communication and Planning Ahead
A. Redefining Hope
B. Meet Molly
C. Reflection: How Do I Help Redefine Hope?
D. Life Expectancy
E. Fostering Inclusion
F. Making a Plan
G. A Person Centered Plan
H. Edward’s Surrogate
I. Reflection: How Do I Help Someone Think Ahead?
J. How to Start
K. Discussion of Treatment
L. Asking Healthcare Questions
M. Location of Care
N. End of Life Wishes
O. Likes and Dislikes
P. Communication Strategies
Q. Write It Down
R. Legal Frameworks
S. Conflicts
T. Review
U. Summary
Section 4: Decision Making
A. True or False
B. Another Outcome for Edward
C. Medical Decision Making
D. Informed Consent
E. Capable versus Competent
F. Is Edward Capable?
G. Healthcare Power of Attorney
H. Identifying a Healthcare Power of Attorney
I. Supported Decision Making
J. Review
K. Summary
Section 5: Ethics of End of Life Care
A. Paul: Transplant or Hospice?
B. Medical Ethics
C. Four Principles for End-of-Life Care
D. Cessation of Life
E. Spirituality
F. The Role of Ethics Committees
G. Ethical and Emotional Conflicts for Paul
H. Review
I. Summary
Section 6: Palliative Care and Hospice
A. Later Stages of Illness and the End of Life
B. What is Palliative Care?
C. What is Hospice?
D. Quality of Life Measurements
E. Medical Futility
F. Social Values
G. When Does the End of Life Begin?
H. Persistent Vegetative State
I. Public Attitudes
J. The Dying Process
K. Signs of Approaching Death
L. Changes in Perception
M. Grief and Loss
N. Review
O. Summary
Section 7: Conclusion
A. Summary
B. Course Contributors
C. Resources
D. References
E. Congratulations!
F. Exam

Staff Writer: Nellie Galindo, MSW, MSPH
Nellie Galindo received her Masters of Social Work and Masters of Science in Public Health from the University of North Carolina at Chapel Hill. She has worked with individuals with disabilities in several different settings, including working as a direct service provider for individuals with mental illness and leading a youth program for young adults with disabilities. She has facilitated and created trainings for individuals with intellectual and developmental disabilities in the areas of self-advocacy, healthy relationships, sexual health education, and violence and abuse prevention. Mrs. Galindo has worked in state government assisting individuals with disabilities obtain accessible health information in their communities, as well as utilizing the Americans with Disabilities Act to ensure equal access to healthcare services.  Disclosure: Nellie Galindo, MSW, MSPH has declared that no conflict of interest, Relevant Financial Relationship or Relevant Non-Financial Relationship exists.
Instructor: Margaret A. Nygren, EdD
Margaret A. Nygren, EdD, is the Executive Director and CEO of the American Association on Intellectual and Developmental Disabilities (AAIDD). Prior to her work at AAIDD, she held two progressively-responsible positions at the Association of University Centers on Disabilities, concluding her service to the organization as the Associate Executive Director for Program Development. Additional previous positions include a Fellowship in the Disabled and Elderly Health Programs Group at the Centers for Medicare and Medicaid Services (CMS) in Baltimore, Director of the Center on Aging and Disabilities at the Lieutenant Joseph P. Kennedy Institute in Washington, DC, and Director of Family Support Services and Director of Mental Retardation Services at Kit Clark Senior Services in Boston. Dr. Nygren earned a Doctorate of Education in Organizational Leadership from Nova Southeastern University, a MA in Clinical Psychology from West Virginia University, and a BA in Psychology from Beloit College. Disclosure: Margaret A. Nygren, EdD has declared that no conflict of interest, Relevant Financial Relationship or Relevant Non-Financial Relationship exists.
Target Audience:
The target audience for this course is: entry and intermediate level Nurses; entry level Psychologists; in the following settings: Intellectual Developmental Disabilities; and the following practice categories: , General Nursing, Gerontology, Home Health, Mental Health, Pain Management.
Relias Learning will be transparent in disclosing if any commercial support, sponsorship or co-providership is present prior to the learner completing the course.
Relias Learning has a grievance policy in place to facilitate reports of dissatisfaction. Relias Learning will make every effort to resolve each grievance in a mutually satisfactory manner. In order to report a complaint or grievance please contact Relias Learning at support@reliaslearning.com.
All courses offered by Relias Learning, LLC are developed from a foundation of diversity, inclusiveness, and a multicultural perspective. Knowledge, values and awareness related to cultural competency are infused throughout the course content.
To earn continuing education credit for this course you must achieve a passing score of 80% on the post-test and complete the course evaluation.
Course Delivery Method and Format
Asynchronous Distance Learning with interactivity which includes quizzes with questions/answers, and posttests.
If you require special accommodations to complete this module, please contact Relias Learning Customer Support by calling (800) 381-2321 or emailing support@reliaslearning.com